Patienten- und Öffentlichkeitsbeteiligung – Patient and Public Involvement and Engagement (PPIE) in der Kinder- und Jugendforschung

• Making research more transparent and understandable for children, young people and their families.
• Enable patients and families to actively participate in clinical research.
• Achieve a patient-centred improvement in our research.
• help researchers to realise projects of high quality and relevance.

The active participation of younger children in all areas of research is often hampered by the fact that they are not always able to express their opinions and needs. This is especially true for newborns, infants, young children and children with disabilities. In these cases, it is important that parents or other important caregivers are involved. Older children and adolescents are more independent and, depending on their age, can participate in a research project with the support of parents and/or relatives.

What is PPIE?

PPIE comes from the English-speaking world and describes the conscious, respectful and collaborative participation of patients, relatives and other representatives of the public in the planning and implementation of research. PPIE can also improve research in paediatrics and adolescent medicine, which in the long term benefits the care and health of children.

Effective PPIE requires activities that are carried out with or by patients, their relatives and the public. One of the aims is to raise awareness and share research knowledge and results. As co-operation partners, patients, their relatives and the public can also influence research according to their ideas, wishes and needs.

The Family Advisory Board (FAB) is a fundamental component of the patient-centred approach of the Paediatric Research Centre (PRC). The Advisory Board is made up of clinicians, researchers, patients and representatives of the public. In four meetings per year with clinicians and researchers, various research topics are discussed in order to take into account the voices and perspectives of children and adolescents in research. This helps to drive research projects forward and ensure that research findings are more transparent and understandable for children, adolescents and their families.

Become part of the Family Advisory Board!

The Family Advisory Board is open to anyone who would like to make a contribution. People of all ages who use, have used or could use paediatric medical services can participate.

Falls wir Ihr Interesse geweckt haben und Sie mehr über das FAB erfahren möchte, wenden Sie sich an ppie@ukbb.ch.

Der eingesetzte Lenkungsausschuss bietet dem FAB Unterstützung. Er besteht aus ausgewählten Personen, die sich für die Förderung der Beteiligung von Patient*innen, deren Angehörigen und der Öffentlichkeit in kindermedizinischen Forschung einsetzt. Der Lenkungsausschuss unterstützt die Aktivitäten des FAB und stellt sicher, dass Patient*innen, deren Angehörigen und Mitglieder der Öffentlichkeit angehört und miteinbezogen werden.

Members of the Steering Committee

• Dr Lina Aerts, Chair of the PPIE Steering Committee
• Dr Isabella Bielicki, Deputy Head of Department Chairwoman PPIE Steering Committee
• Dr Lut Berben
• PD Dr Julia Bielicki
• Sibylla Kämpf, President Intensiv Kids
• Dr med. Christina Schindera
• Prof Dr med Heide Elke Viehweger
• Dr Tatjana Welzel
• Noemi Hiroshige, Coordinator
• Britta Wagner, Coordinator

Klinische Studien sind notwendig um eine evidenzbasierten pädiatrischen Versorgung zu gewährleisten. Oft fehlen entsprechende Daten oder Studien sind zu klein. Der Miteinbezug von Kindern, Jugendlichen und deren Eltern kann eine wichtige Strategie sein, um die Forschung für die Patient*innen relevanter und ansprechender zu machen. Akut ist eine aktive Beteiligung oft schwierig, da gesundheitliche Leiden bei Patient*innen und deren Eltern ein hohes Maß an Stress auslösen. Zudem haben viele Eltern gemischte Gefühle, wenn sie über mögliche Forschungsprojekte informiert werden, da sie für ihre Kinder entscheiden müssen und mit Ungewissheit konfrontiert werden – eine Studie wird in der Regel nur dann durchgeführt, wenn es eine Lücke im medizinischen Verständnis gibt. Leider führt dies dazu, dass Kinder oft Therapien bekommen, die nur unter Erwachsenen untersucht wurden.

PPIE is often a major challenge for researchers. We know from surveys that patient participation in Switzerland is limited because investigators do not feel supported in the organisation, communication and structuring of the collaboration when conducting PPIE. The PFZ offers a wide range of tools that can help investigators and other researchers to plan, conduct and communicate health-related and medical research with PPIE.

Counselling and other support services

The resources below provide information on training courses for researchers and individual support services.

Paediatric Research Centre (PFZ), UKBB: Provides advice and coordination of individual research projects in the field of paediatrics (paediatric and adolescent medicine, paediatric surgery).

Department of Clinical Research (DKF), USB: Provides resources and training for researchers and public stakeholders.

Swiss Clinical Trials Organisation (SCTO): Promotes dialogue and advocates the support and implementation of patient and public involvement (PPI) in academic clinical research in Switzerland.

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